What NOT to Say…

When we made Tori’s story public we expected to hear from people genuinely trying to help save her life. We have greatly appreciated the time and energy people have put into trying to help her, and us!

However, we have also received messages and comments from people who clearly haven’t researched Krabbe and are merely trying to push their own beliefs and platforms on us. There is a huge difference between the two, and it is always obvious which camp the person commenting is in.

Below is an email we received yesterday from a woman who claims to be a health and wellness coach on her Facebook page. She has stated in the past that she believes that things like ranch dressing cause cancer, to give you an idea of her beliefs. She is part of a Facebook community that I am also involved in, and that is how she heard about Tori. She doesn’t like to be confronted and always deletes comments from people questioning her “facts” with actual research. She strongly believes what she preaches but is apparently very insecure when questioned.

This is an example of what NOT to say to a family that has a dying child. I included my responses as well to paint the entire picture.

NOTE: this post is not to stir up a debate about vaccines. Please do not comment with your opinion about them as it is completely irrelevant to Krabbe and it isn’t the point of this post at all. 🙂

Hi Lesa,

I’ve been thinking of you and your family. How is Tori doing? And yourself?

I wanted to get in touch with you as I find out the resource I had for you never got in touch with you. I am sorry.

When I first read of Tori’s story I immediately sensed why she had the reaction she did. To confirm, she had these problems right after vaccinations, correct?

The toxins that are in the vaccines include aborted fetuses, heavy metals, and a host of other things that God never intended our bodies to have. Vaccine injury is very real and to date the US gov has paid out over $3 Billion to families.

Here are some resources to get you started in the healing process of Tori and your family:

I highly recommend that you start a vaccine detox with Tori to help her body get rid of the toxins. 
(Links omitted)

Please let me know what questions you have and how I can support you in Tori’s healing and in discovering the truth. 

It is apparent that this woman has not actually been following Tori’s story or diagnosis at all. So, the fact that she wrote to us with those suggestions was not helpful or welcomed. But, I decided to still answer with grace.

I kindly responded to her email:

Thank you for sharing your thoughts and resources! 

Unfortunately, Tori has Krabbe Leukodystrophy – a genetic disease. Brennan and I both carry a recessive gene for the disease (we now know) and unfortunately Tori inherited both recessive genes. 

Krabbe destroys the central and peripheral nervous systems because the body doesn’t produce the GALC enzyme. 

I wish it were as simple as a vaccine. We are pro-vaccinations and believe they do more good than harm. Her shots had nothing to do with her genetic makeup, so without a miraculous healing from God Himself, she isn’t going to live past the age of 2 years. 

For more information on this terrible disease you can see http://www.huntershope.orgor http://judsonslegacy.org/krabbe-disease 

Thank you for your concern! If you want to keep up with Tori, I have been blogging extensively about it at https://thebrackbills.wordpress.com and her Facebook page is http://www.facebook.com/prayingforTori

Her only response?

Even though they contain aborted babies?

 I thought for a long while about how to reply because I wanted to be kind:

With all due respect, I have never seen a legitimate source write about vaccines containing aborted fetuses. And, if it is true, it’s not like they aborted the babies just to make the vaccines. If anything, that aborted fetus is saving lives by being in that vaccine, which takes a horrible act and brings good from it in a way…if it is even true.

But, that isn’t what this is all about. Our baby is dying (and suffering in the process) and right now I honestly couldn’t care less about the vaccine debate. What I care about is getting legislation passed in each state to ensure that every newborn is tested at birth for Krabbe so that no more babies lose their lives to this horrific disease.
If the issue had been left there, I wouldn’t have minded. However, she posted the following status on her PUBLIC page not long after this conversation happened:
IMG_9894I was stunned when I saw this. The timing of it made it impossible to believe that it could be about anything – or anyone – else. I commented on her status asking if she was writing in reference to me, and she promptly deleted my comment (and the ones from other friends of mine who saw the post) and then deleted the post and blocked all of us.
The whole situation made me laugh, honestly. Yes, I was annoyed when I saw her status about us. How anyone could say something like that, claiming that we aren’t doing everything we can to save our child’s life, is unbelievable. But, more than anything, I feel sorry for this woman. She is so misguided and her Facebook page is filled with ridiculous health claims. She doesn’t appear to have any credentials or health education, yet she is offering health claims and advice to the public as a business. Sigh.
Krabbe is genetic. Nothing we did caused it. Vaccines sure didn’t. In fact, vaccines are highly recommended for Krabbe babies.
Moral of the story: Don’t say that parents of a dying child are not trying to save their child’s life. Don’t offer advice without researching the disease. It isn’t helpful, it hurts feelings, and it wastes precious time.

38 thoughts on “What NOT to Say…

      • so nicely.It’s a shame people have to be so rude at such a time.We pray Tori and her entire family.I just could not imagine thinking
        such a thought let alone posting it.

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    • Lesa, I’m proud to have know you and I’m soooo sorry for the tragedy you are living. I’m praying for you all. And your responses to that all-too-common type of nincompoop were filled with Christian logic and compassion. You are one of the most beautiful souls I ever had the pleasure to know. I weep with you. And I know your faith is strong. You were a bright spot in my life, and you are a bright spot in the Heavens.

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  1. Try not to let your mind replay her words, because that will torture you. That she is completely wrong both in what she said and the manner in which she said it is self-evident. You don’t have time to take her views into consideration. The quicker you can forget about her, the better off you will be. Meanwhile, you have hundreds of friends who care about you and about what you’re going through, who won’t be so susceptible to the devil’s influence over their words, so that if they do slip up and say something that is wrong, at least their motives won’t be bad, so that they will respond to correction.

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  2. Lesa, you’ve demonstrated a great deal more grace than I could have if faced with the same situation!
    You, Brennan and Tori are continually in my prayers.

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  3. I, too, would have been much less graceful than you in my answers to her. But she is sadly mistaken in her zeal to “convert” you to her way of thinking. You know you are right. Just rest in that, and know that you are doing EVERYTHING you can do for Tori. I’m so sorry, though. The last thing parents need who are dealing with such a serious situation as you two are is someone popping up with misguided “medical information”. It’s exhausting enough to keep up with all you need to know and do for Tori without having to wade through a quagmire of misinformation. I did a quick search on aborted fetuses and vaccines, since I’d never heard that before…here is the first article I came up with. I’m sure there are plenty of others, too. Not that you need to re-engage her, but if she comes back to you and you wish to, you could point her in the direction of some actual medical information about the issue. Not that she would probably care. Continuing to pray for your sweet little family, especially Tori.
    http://www.drwile.com/lnkpages/render.asp?vac_abortion

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  4. Lesa – I do not know how you do it – You are such a good example of a person living for Christ and with Christ in your heart, in your words and your actions. It is unfortunate that you have to deal with these inconsiderate and rude words in the midst of your family’s struggle. Praying for all of you constantly.

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  5. Only thing I can say is that I am very proud of you… We are all keeping the faith and praying daily for all of you not just one of you and I know that even though it had to bother you to a point we all know that you and your family are doing everything that you can and that is what God is seeing as well… I don’t know how this all turns out but I do know that he is real and that he is hearing us and that that little girl is surrounded by a whole lot of people that love and care about her…

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  6. I would not have been able to reply to her comments as gracefully as you did. Honestly the woman sounds like she is off her rocker. That’s the nicest way that I can put it. You are both amazing parents. Keep doing what you are doing for your beautiful baby girl.

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  7. I saw that status update and I had NO idea it was about you guys and Tori. I am ashamed to say that I think I “liked” the status because of the general premise….because yes, if someone was actually neglecting saving their child’s life that would be tragic. But I had no idea it referenced specific people who actually ARE doing everything they can, and definitely didn’t know it was y’all!! That status (and her messages to you as well) was totally uncalled for, insensitive, and plain ignorant. She obviously doesn’t understand the disease or genetics, and I will be more careful with “liking” or commenting on things like that from her.

    I have been following Tori’s story since the beginning, but haven’t commented yet because I find it difficult sometimes to say the right thing….I’m not good with words of comfort or things like that. But I have been praying and reading the blog, and will continue to do both. 🙂

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  8. Keep hugging your baby and enjoy every minute. We are supporting you from afar and praying for your family to find some joy in each day with Tori. You, despite facing a very challenging time in your life AND being sleep deprived, continue to amaze with your faith and grace to such a miserable person. If God doesn’t use Tori as a testimony of His healing power here on Earth, know that He is using your Christlike attitude through this challenge as an example to many…myself included!

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  9. I admire your grace under pressure and it’s so encouraging to me to see God just carrying you through this time. You have the support and prayers of thousands of people who have read about Krabbe and who just want a miracle for Tori and who are praying for God’s strength for you. I hope that you can put all of her unkind words out of your mind. Hugs!

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  10. Goodness. I would have wanted to reach through the screen and slap that woman. You are much more graceful than I. I am so sorry for what you are going through.

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  11. You are so gracious in your responses. A hard lesson I learned as a parent is, I have to live with God’s plan for my child’s life. I had learned to see and bend to God’s will in my life but it was a whole new lesson when it came to my children. That lesson also taught me to love others in that same struggle and not interject my feelings on the situation. A lesson that still needs to be bestowed on this individual. Love and prayers for your family.

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  12. Lesa,
    I have said this before and I will say it again. You and Brennan are excellent parents. I will now add to that one thing. Please do not let this woman or anyone like her take up free rent in your brain.
    Love and prayers,
    Sally

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  13. Lesa,
    I know we don’t know each other personally ( Megan Hall is a mutual friend and why I started following/praying for you all months ago), but I saw this and had to comment. My son is on the autism spectrum and I hear things like this unsolicited all the time, but you continue to amaze me with your faith in God’s healing and your incredibly kind words to all in the midst of this difficult time. I only pray that I deal with these comments as graciously as you have.

    You are not only an amazing mama, giving it your all, and I am in awe of all you. I’m praying for strength and sleep and healing for Tori ( and you and Brennan).

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  14. Dear Lesa,
    I’m so sorry that you have been subjected to this at this time. Unfortunately there will always be people like this out there. You handled the situation in such a way that is such an amazing testimony to our Lord. I have lived with Type 1 diabetes for over 30 years and over that time I have received a lot of unsolicited “advice”. Most of the time I just smile and keep doing my thing. However, it does hurt, especially when they have never walked in your shoes. Just keep being the sweet wonderful parents that you are to your precious little girl. You are in our prayers.

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  15. Praying for your family and your precious baby girl. You handled that situation far better than this mom would’ve. What an inappropriate time in a hurting families life to push ones opinions on them. May God protect your family from anymore unnecessary advise.

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  16. Oh my! Sometimes ignorance is bliss as sometimes ignorance is just, well, ignorant! I think we know what this is!! Continued prayers for your baby girl and for you as parents!!

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  17. Lesa, I know you will hear this so many times, but your response was VERY gracious despite the very thoughtless responses you received! Unfortunately, there’s always going to be someone out there that feels the need to push their agendas on someone else.Your blog has been an outreach and a blessing to so many, but the main purpose of it is so that we may support you financially and prayerfully. Right now the last thing you need is for someone to callously say that this was due to something you had the power of preventing. Focus on those who are an encouragement to you, and lavish all your love on your precious girl. You are always in my prayers! ❤

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  18. Good job Lesa. You show such grace and I am constantly praying for people like this woman that do not have a clue and only read what they want to read to further their agenda. I pray that they leave you, Brennan and Tori alone. I pray for them to see Christ through you and Brennan and Tori. . People like her seem to come out of the woodwork when stories like Tori are shared publically. My dear Lesa, please don’t allow these fools to get “under your skin”. They are just demonstrating ignorance and lack of respect. Yes it is a free country with freedom of speech and praise God for that. But some folks can just be hurtful, rude and just downright ignorant. You and Brennan are amazing parents and are doing everything within your power to love and care for your beautiful, precious Tori. Bottom line, you did a wonderful job of shutting her up. Lol. Love you so much and praying, praying and praying.

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  19. You are a great example of being graceful while still standing up for yourself. I have been following your story and praying for your beautiful baby girl and your family. I hope nothing but good things for your beautiful family.

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  20. As many have said, your grace under fire is amazing. I’ve been drawn in a few times by dialogues like this which after finishing leave me feeling like I need a bath. If nothing more, you just taught a whole lot of people what Christlike self-restraint looks like. You are beautiful Lesa, and God did well in entrusting Tori into your care for this time. Sending love and hugs and prayers, and a protective force field around you shielding you from distracting arrows thrown by the enemy.

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  21. Dear Lesa, When Courtney told me about the post you received, We were stunned to think that someone could write such stuff, especially now when what we all need to do is Pray!! We are continuing to pray!

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  22. So sorry and lots of prayers for all. Also sorry for the rude comments that people tell you, and you are very graceful in your answer to them. It is hard enough to deal with let along to try and deal with rude people. Hugs

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  23. Such grace and Godly character in your response Lesa. The other day you blogged about originally hoping for a boy so they can look up to Brennan; Tori has a mom of Godly character to look up to. Keep on doing what you are doing and we will continue to pray pray pray.. Thank you for sharing Tori with all of us. 💝

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  24. So sorry you had to deal with this, you did so with kindness and grace. Sadly anyone can claim anything today on the internet and have an audience. My prayer is she does not cause anyone else any pain with her misguided ideas. Love to you all.

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  25. I have words. I’m so so sorry. I think you handled this particular situation with more grace than I could have. We continue to hold your family up in our prayers. ❤️

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  26. First, Your family and Tori are in my thoughts and prayers each and every day. And secondly, you teach me something with every post. Your grace faith, strength, honesty and compassion astound me. I am sorry someone tried to use your beautiful baby girl and situation to back their own agenda, despicable. Praying for a miracle.

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  27. My granddaughter was born with HLHS, which is literally half a heart. My daughter has cancer. You would be amazed at the rude comments, useless advice, and scoldings we have all received! Just remember that Tori is touching more lives, and bringing about more prayers and thoughtful gestures, than most of us ever will, no matter the lengths of our lives. Right now, I know that’s probably not comforting. But please know that she is a beautiful blessing to all of us. I pray for her, for you her parents, and for God’s comfort and strength to be upon you all.

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